Our beautiful daughter, Emily, was diagnosed with infantile spasms in dec, 09. Our world has been turned upside down and this is our story...

Sunday, February 7, 2010

in the hospital

This will be a quick one.

We are back in the hospital. Emily's seizures have been increasing everyday since we stopped the ACTH. We have upped and changed all of her meds and it just doesn't seem to be working.

The day before yesterday she had 20 , yesterday she had over 16 so far its 3am and she has only had 1.

I think she is cutting teeth and maybe, just maybe, that is the explanation for the dramatic increase.

She also started this new thing, I don't know what else to call it, she blinks really fast and straightens out her arms. We thought they were seizures but she did it 3 times on the eeg yesterday and it did not show up as seizure activity. We are waiting to talk with the dr in a few hours and see what he says.

He wants to start her on vigabitrin (sabril) and so do I. Hopefully we can do that soon. I will try and update later today.